I remember that during school days, we had Thalassemia NGOs come to our school, talk about their initiative and later we would get forms asking to collect donations. From every class, students who collected the highest amount would get certificates, medals, rewards etc. Among students, it was less about spreading awareness about the disease and more about who collects the highest. I believe this is where a lack of empathy started to surface.
Sheikh Aman Ahmad, a 38 y/o thalassemia patient from Jharkhand says, “I need a blood transfusion every 10-12 days, I’m finding it difficult to find a donor due to the pandemic. Not getting a donor is a big challenge.”
Most people are unaware of the fact that India is the ‘Thalassemia Capital’ of the world where more than 10,000 children are born with thalassemia major every year. Thalassemia is a blood related genetic disorder caused due to errors in genes, where the body doesn’t make enough of a protein called Hemoglobin, an important part of RBC.
Thalassemia is registered as one of the 21 disabilities in the Rights of Persons with Disabilities Act.
In India, every year over 1 lakh patients lose their lives before they turn 20 primarily due to lack of access to healthcare facilities. Most patients are poverty-stricken, compelled to bear the brunt of the expenses of medicines, checkups, transportation, medical fee alongside the cost of blood transfusions every few days. The outbreak of Covid-19 aggravated their pre-existing challenges.
38 y/o Aman’s family’s monthly income is 17,000. His brother who was the sole breadwinner of the five-member family lost his job due to the lockdown. It costs Aman 6-7 thousand rupees every month to buy some more time to live.
According to an article by IndiaSpend in June 2018, India faced a shortage of 1.9 million units of blood. The situation worsened due to the pandemic. Currently, there are nearly 2 million Thalassemia major patients in India who are in dire need of blood. “My son died on my lap, right at the time I reached the gate of the blood bank,” says Gudiya Devi. Gudiya, 30, is one of those 270 million Indians living below the poverty line. She took several rounds of the blood bank for days.
“They told me that if I wanted blood, I had to bring my own donor or write to the Chief Medical Officer,” she added. Her 5 y/o son Vivek had thalassemia. He died in her arms when she reached the blood bank with the slip from the medical officer. Gudiya Devi lost her son due to inaccessibility of blood and inefficiency of the concerned authorities.
As the number of Covid-19 cases escalated, most hospitals were designated for Covid-19 and blood donations across the country ceased, posing a threat to life for thalassemia patients. Due to curb on movements, fear of getting infected and lack of awareness most donors refrained from donating, which consequently led to blood banks running out of supply.
“It is becoming a struggle to even stay alive,” says Sheikh Aman, a thalassemia patient who has developed hepatitis C due to unavailability of blood for transfusion. Soon after the onset of Covid-19, social media witnessed a flood of appeals/requests by patients and their families for the arrangement of blood and donors. Prior to the pandemic, Red Cross Society managed around 200 units of blood daily, which dropped down to 30-40 units in the lockdown. As per e-Rakht, the number of blood donation camps held across the country dropped to 98 by April 2020 against 606 in January 2020.
Financially sound patients somehow manage to fight this life-longe battle. It is the patients from BPL and low-income families who’re battling unarmed. Most patients living in rural India do not even have blood banks within 25 km radius; awareness about government schemes is a far fetched thing for them. In both the cases of Sheikh Aman and Gudiya Devi, they had to travel 50 and 30 kilometres respectively for checkup and transfusion.
A lot needs to be done by both, government and the citizens. Physically and financially abled people must realise that it’s their moral responsibility to donate blood. People who can’t donate blood can sponsor a needy patient’s transfusion or medicine. There are numerous ways in which privileged people can contribute. Spreading awareness by sharing authentic information to uneducated patients about the disease or government scheme also counts.
Envisioning a healthy society just by expecting the government to launch schemes for thalassemia patients and not do our basic bit is a misapprehension. There are plenty of NGOs, blood banks, etc. looking for donors. All the information is just a click away.
Every year hundreds of Thalassemia patients like Vivek suffer and die, either due to unavailability of blood or lack of access to healthcare facilities. In the end, the reason does not matter. Life has been lost. Let’s pledge not to fail one more Vivek. Let’s realise our moral responsibility and contribute in whichever way feasible.
“It is the moral obligation of every person born in a safer room to open the door when someone in danger knocks.”- Dina Nayeri